Story
Bone Flute tells stories. These range from science communication – when my collaborator, surgeon Rudolph Venter spoke at the AIAIA exhibition opening about my ability to tell stories about his work so that non-specialist audiences understand it, he’s referring to that aspect of its storytelling – to the stories the art object tells (about mortality and celebration of life), and my personal life story as a hospital patient woven into this art-research project.
One of the ways in which I see my work as an artist and a researcher is as an act of storytelling. Stories can be told in many ways: through spoken word, in person, through text and image, and – my personal favourite – through objects. As well as making my own objects, and having my art and design work selected for exhibition by others, I’ve staged my own exhibitions of my work, and I have worked as a curator selecting work by other artists, designers, scientists, technologists and the public for exhibitions along a theme.
On my first visit to Rudolph’s laboratory at Tygerberg I was there as an artist and researcher, to discuss his work and the creative project I wanted to use his processes to make, but I was also there as a patient. A few months previously, I had injured my hip while running. I’d run a difficult course on a mountainside, in the rain, and later that night in bed my right hip and thigh were hot and stiff. I had several sessions with a physiotherapist, and was waiting to see if the injury would heal by itself, but it wasn’t going away. I suspected it may be a labral injury, but a scan would help to diagnose it. I asked Rudolph if he could help me book a scan, and so before I saw him, my first stop was at the patient registration window on the ground floor to get myself registered on Tygerberg’s system. After I’d met with Rudolph at his laboratory, he directed me to where I needed to drop off my forms to book an MRI scan. As a public health patient, it would be a wait of several months to receive it.
I’d injured my hip within the first few months of starting my fellowship, and had my MRI scan, which fed into my plans for my work, several months after that. A few months before the end of my fellowship, I was brought back into the hospital for further scans as a patient – a different hospital this time, and for a different purpose. This time, it was for CAT scans, and I wasn’t in any position to choose otherwise.
My GP had booked me for a colonoscopy, based in part on a family history of cancer – my grandfather had died long before I was born, before my own father was an adult, of colon cancer, at 49, one year older than I was now. My parents had never spoken about us children having an inherited cancer risk, but as I started to reach the same age as my grandfather, and as my partner fell pregnant and I was set to become a father myself for the first time, I started to think about it – and so I came to be sitting with my partner, soon after coming out of sedation following the examination, in front of a surgeon’s desk as he explained that they had found a large tumour almost completely blocking my colon. I was sent for a CAT scan the next day to see whether the cancer extended beyond the parts the doctor could see.
Fortunately, the CAT scan showed the tumour contained to my colon, and it was operable. A week later I was on the surgeon’s operating table, where they removed twenty centimetres of my colon and connected the ends back together again. It was done via laparoscopy, cameras and instruments inserted through several small incisions in my abdomen, in addition to one larger cut above my pubic bone at the main site of the operation. This larger cut is almost identical to the bikini-line scar left by a Caesarian. Six months later, I found myself in the same operating theatre at the same hospital, though this time it was my partner on the table. I was holding her hand, and we were singing together as our son Ira was born through emergency C-section, lifted out through a matching incision in her abdomen.
My own surgery took place on the same day that the simulated operation on my Bone Flute was first due to take place in Rudolph’s laboratory. I had to cancel this initial appointment with Rudolph and Alessandro after I received the results of my colonoscopy. It had taken a long time to find a date that worked for all three of us (and my partner as the fourth) and I was loath to cancel it. It would be another two months before we could reconvene, just in time to complete the flute for exhibition. As it was, on the same day I was first due to drill holes into a replica of my own femur, it was instead my body that was pierced by the surgeon’s instruments, on an operating table in another hospital in the same city.
By the time of my diagnosis, I had taken up private health insurance for the first time in my life, encouraged by my partner. This meant that there was a very short time between my diagnosis and my operation. If I had still been in the public healthcare system, it might have been much longer – and if I had wanted it to take place sooner, it would have cost a great deal of money. Instead, I could get top-quality care, in a comfortable hospital with good facilities, almost immediately. And this may have saved my life.
Something else that supported my recovery was the resonance between my art-research project and this sudden internal accident which had brought me as a patient into the same field I was creating and researching in. My diagnosis did not bring me suddenly into the hospital and into contact with medical technologies from a place outside of this realm: I was already immersed in it. It felt meaningful – this was a story, there was something in it that made sense. And that feeling of meaningfulness can, I think, be a powerful support through a difficult time, as the next few months proved to be.
My engagement as a researcher and artist, working from a professional position, in collaborative, equitable relationships with medical workers, and with a public exhibition to come as a platform for sharing my work, I think gave me power as a patient which might otherwise have been harder for me to feel. I had already exercised choice as a patient in selecting the type of scan for my hip. When I first learnt that a tumour had been identified in my bowels, I wanted to hear from the surgeon his experience, and his approaches to my surgery. He was willing and able to share this with me. In retrospect he was still exercising his legitimate power as a doctor in how he led me, the patient, into unfamiliar terrain. Reading Kneebone on what he learnt as a doctor, he recounts taking a patient gradually into the world they are entering through sudden diagnosis, as my surgeon did: it was one step at a time, first surgery, and chemotherapy may not be needed. After the surgery, the biopsy – and now chemotherapy is advised.
Beyond the basic questions to establish what the surgeon planned to do, I at first consciously ceded power to the doctors. This was serious business. They’d reassured me of their experience (around 500 abdominal cancer surgeries for my surgeon) and we’d talked about what they intended to do. Chemotherapy – it sounds daunting, and no one ever says it’s easy, but I was not going to find out too much about it beforehand – I’m just going to do it. It was only once I’d started and experienced how unpleasant it felt, that I started to find out more. First was talking to other people who had been through it (surprising once you have cancer how many people you know have had it too, and you didn’t know about it). They told me about the permanent side-effects chemotherapy had left them with: neuropathy of their hands and feet. I’d been prescribed four months of chemotherapy, which is less than the standard six months on my particular treatment, but halfway in I was concerned enough about the risks I was facing of permanent side-effects versus the risk of a recurrence of the cancer, to put some research into it.
The relationship between duration and efficacy of chemotherapy is notably under-researched – I think historically the idea has been to see it as a life or death struggle in which rather do more than less, and damn the side-effects. But gradually there has been push-back against this approach, and one significant study conducted by IDEA (International Duration Evaluation of Adjuvant Chemotherapy) and published in 2018, which investigated multiple sites and over ten thousand patients to look at the difference in outcomes between shorter and longer durations of chemotherapy treatment. This study concluded that for particular risk categories of colon cancer, and particularly drug regimes – both of which I fell into – 3 months duration of treatment showed no significantly worse outcomes for survival than 6 months of treatment, but significantly decreased risk of neuropathic side-effects. I took this paper to my oncologist and explained what I’d been thinking: that weighing up the risk of a permanent disabling neurological condition vs no discernibly increased chances of survival with longer treatment, I was considering shortening my course. “Ah, I was at the conference where they announced these results” he told me, “and it’s a good study”. He told me that he supported my line of thinking, and he would not object to me deciding to stop at three months of treatment instead of the four he had prescribed. I completed my course of chemotherapy at the end of March 2023, and a week later my son was born.
As an artist and curator, I love to tell stories through collections of objects, text, image, and other media and experiences. We can define ‘stories’ here broadly, to include factual explorations of real-life phenomena. Most of my curatorial work has been for the institution Science Gallery, which was founded at Trinity College in Dublin in 2008, and now has other university-associated galleries all over the world. Their remit is to explore science through a combination of art and design objects, and scientific experiments and demonstrations. At the end of my PhD, I co-curated Surface Tension: The Future of Water (2011) drawing on my thesis, which had as a central case-study a novel method for pumping water in developing world contexts. Several years later, I co-curated Design and Violence (2016) as a co-production between Science Gallery and NY MoMA.
I see exhibitions, whether of my own work or the work of others, as functioning like object-based essays, which use a constellation of exhibits to explore a theme, supported by texts and events. Part of the work of research and art is in making public – of sharing the results of your work (and sometimes the process of it) with audiences. I knew that with this project, my main output would be an exhibition that would allow me to work with a range of media, with Bone Flute at the centre; and that in this exhibition my experiences as researcher, artist and patient would combine.
The exhibition AIAIA – Aesthetic Interventions in Artificial Intelligence in Africa was staged on the threshold of my personal and professional life – in a street-level artist-run gallery called Brutal in the complex in Cape Town where I’ve had my studio for the last ten years or so. I exhibited Bone Flute as an object on a pedestal, near a wall-based installation of images showing some of the references for the project (from memento mori to automata), with the short film we’d made of the operation on a large TV-screen. Another smaller TV-screen in the space showed a loop of images from my MRI and CAT scans, and a large window served as a light box for a several-metre-square collage of my medical scans. In the centre of the space was a table and chairs, for meeting people during the exhibition. I intended to use the exhibition space as a live laboratory for the few weeks it was open, working on material to add to the display, conducting interviews and talking about my work. During the exhibition I wrote into a large timeline chart covering the two years of my research fellowship. It has columns for the 24 months, and two rows: one row for my personal experiences and one for my art-research work, so that connections along the same timeline can be seen between the two. The flute was performed at the opening and closing events.
Bone Flute is itself a story, told in object form, supported by image, text and video. It’s a story about the capabilities of technology to perform a kind of magic – to extract hidden parts of ourselves and bring them outside the body; about the goods achievable through collaboration – a surgeon, an artist and a musician working together on the same project; about art as both a reminder of death, and our celebration of life in the face of it – the memento mori and the danse macabre. It also, as a friend pointed out to me at the closing event of the exhibition, points to the potential for objects to be animated, and to speak. What struck them at seeing me play the flute was the significance of the breath, rather than the bone; the breath that animates the bone, and is shaped by it to make sound.
When they told me this, it brought back something I’d read in Meghan O’Gieblyn’s excellent book about the mapping of religious feelings onto technology, God, Animal, Human, Machine (2021) in which she refers to one of the chapters of Ezekiel in the Bible: the story of the valley of dry bones. It contains the redolent image of bones refleshed and brought to life by divine breath. Their observation set me on a path to identify animism using bodily remains in other places: such the Mongolian practice of turning a favoured horse after death into a musical instrument, using their hair, skin and bone to make a type of lyre, through which horse-like sounds are made. So the stories told by Bone Flute were multiplied by its public exhibition and performance, as audiences reflected back to me their reception of the work.
One of the elements of the story told in the exhibition is the coincidence between medical technology as the object of my art and research, and myself as the object of medical technologies once I became a patient in the hospital through illness. Not only that coincidence, but the ones that preceded it: at the start of my fellowship my introduction to a surgeon who uses technologies that would help me to realise an idea for an artwork that I’d had some ten years previously; the injury to my hip soon after meeting him, making a medical scan necessary that would help both to diagnose my condition and obtain the data for the artwork; and finding the other collaborator I needed, an expert musician, thanks to his being friends with the medical technologist printing my femur. And further, perhaps the most resonant overall coincidence: I was working on an artwork about mortality – with my own mortality the immediate subject, given it was my own femur I was reproducing – when I was diagnosed with a life-threatening illness.
And one more: when I was waiting for that first, fateful colonoscopy in the surgeon’s hospital rooms, I was reading a book I’d picked up recently on the bargain table outside a book shop in a shopping mall. Titled Red Thread: On Mazes and Labyrinths (Verso Books, 2021) it’s an account of labyrinths and mazes by Catherine Higgins which becomes increasingly… labyrinthine as it follows a thread from historical and mythical descriptions of labyrinths to the author’s own experiences in relation to them. I’m not sure, or I can’t remember, exactly what drew my attention to it. It’s a subject that interests me, and I was already intrigued in my research by the figure of the minotaur, that inhabitant of the labyrinth on Crete, in relation to some of my reading around AI and technology: in James Bridle’s book about technology New Dark Age: Technology and the End of the Future (2018) he refers to ‘minotaur chess’, in which a computer and a human collaborate to play chess against another human-machine duo (as now practised by Gary Kasparov, famously the first world chess champion to lose to a computer, IBM’s Big Blue, in 1997).
On the cover of Red Thread is an iconic image of a labyrinth, as on an antique coin, circular in outline, made up of quadrants of coils turning back on themselves. I was looking at it and thinking about the resonance with my present situation, in which the doctor’s instruments would soon be exploring my own internal labyrinth, my intestines, when I reopened the book and turned to the next page. This is what I read:
To feel trapped within the labyrinth’s intestinal coils ushers in thoughts of entrails, of the strange unremembered red tunnels out of which we all, once, emerged … The labyrinth is, then, both a symbol of the body and its fragile mysteries, and a gesture of optimism that a corner of the universe can be mastered and given pattern and order by the human mind.
Red Thread: On Mazes and Labyrinths (2021, Verso Books) by Catherine Higgins, p.23
A few hours later, sitting in the doctor’s surgery and hearing what he had found inside me with his snake-like scope, I entered the labyrinth of surgery, treatment and recovery, and the image of the labyrinth became, like a mise en abyme, a thread which guided me through it. A text on the wall of my exhibition describes this motif, along with the snake, a symbol that entered my work through my plans for a snake-like automaton that will play the flute, wound around it like the Rod of Asclepius, and that came to resonate with my experience of medicine as I grappled with the voluntary poisoning of chemotherapy:
Looking back over the last two years, I feel as though I am following threads through the labyrinth, with the strands of my own personal fate woven into my art and research. The labyrinth became one of the motifs to my experience, along with the bone flute, the most ancient musical instrument weʼve found, and the snake: the next symbol I intend to combine with the flute. The snake is a symbol for medicine, combining toxicity with the potential for renewal, as it sheds its skin and emerges anew.
An extract from a wall text in my exhibition AIAIA
Coincidences lend themselves to stories. “The reason we respond positively to accounts of coincidence”, write the authors Martin Plimmer and Brian King in their book Beyond Coincidence (2019) “ever eager to give them the benefit of the doubt, is because they make such good stories. They have the resonance of myth and fairy tale, with their dramatic shifts of fortune, their spectacular life and death events and their many enchanted objects and preoccupations… a good coincidence story has the gravitas of Greek drama, the difference being that it is true” (p.5).
They describe here the pleasure for audiences in factual stories of coincidence. But before the story reaches an audience, it has meaning for the person experiencing the coincidence. In the real-life stories collected by Plimmer and King, “when coincidences resonate personally and intimately it becomes hard to dismiss them as mere chance, events that are slung together by the wind”. Whether or not the coincidences they experience “have a deeper meaning in any truly objective sense”, they carry meaning for the person perceiving and experiencing them, for whom they may produce “emotional catharses and transformations”. So it was for me. It felt meaningful that I should find myself brought deeper as a patient into the world I was researching and making art in, and I felt supported through a destabilising and frightening experience by the feeling that my experiences were contributing to a story, and to my work.